Browse Items · Pediatric Palliative Care Library

Adverse Events During Intrahospital Transport of Critically Ill Children: A Systematic Review

Intrahospital transport of a critically ill patient is often required to achieve a diagnostic and/or therapeutic objective. However, clinicians who recommend a procedure that requires transport are often not fully aware of the risks of transport.…

Tags: 2020, Adolescent, Anesthesia & Analgesia, Baetzel A, Child, Child Preschool, Christensen R, Critical Care/methods, Critical Illness/therapy, Elliott A, Haydar B, Humans, Infant, Infant Newborn, January 2021 List, Kamal A, MacEachern M, Pediatrics, Transportation of Patients

Advice seeking and appropriate use of a pediatric emergency department

OBJECTIVES: To determine whether seeking advice prior to an unscheduled visit to a pediatric emergency department (PED) influences appropriate use of this setting for minor illnesses. DESIGN: Cross-sectional questionnaire survey. SETTING: The medical…

Age-dependent change in behavioral feature in Rubinstein-Taybi syndrome

Rubinstein-Taybi syndrome (RTS) is characterized by developmental delay, postnatal growth retardation, typical facial appearance, and broad thumbs and big toes. The behavioral phenotype of children with RTS has been described as friendly and having…

AIMP1 deficiency presents as a cortical neurodegenerative disease with infantile onset

We report the second family with AIMP1 deficiency, due to a homozygous truncating AIMP1 (g.107248613 C > T) mutation. This female showed early-onset developmental arrest, intractable epileptic spasms, microcephaly, and a rapid clinical course leading…

All-cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014

Aim: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014.…

An approach to the diagnosis of metabolic diseases

Inborn metabolic errors, which are not common, may have significant implications for patients. Those patients with such errors who have acute life-threatening symptoms must be treated immediately, and specimens for analysis should be obtained and…

Tags: 2004, Backlog, Barness LA, Child, Fetal And Pediatric Pathology, Humans, Inborn Errors/diagnosis/genetics/metabolism, Infant, Journal Article, Laboratory Techniques and Procedures, Metabolism, Newborn, Q3 Scoping Review Results

An integrative approach to music therapy in pediatric palliative care.

Tags: 2014, Adolescent, British Columbia, Child, Child Preschool, Clark BA, Female, Hospices, Humans, Infant, Journal Of Palliative Care, Male, Music Therapy, Palliative Care, Program Development, Program Evaluation, Siden H, Straatman L, Young Adult

An Order Protocol For Respiratory Distress/acute Pain Crisis In Pediatric Palliative Care Patients: Medical And Nursing Staff Perceptions

BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family,…

Analgesics for the treatment of pain in children

Analysis of the circumstances at the end of life in children with cancer: Symptoms, suffering and acceptance

AbstractBackground: In an effort to improve the quality of life of children with cancer, this study analyzes the signs and symptoms at the end of life in such children. It is hoped that these data will contribute to the development of appropriate…

Annual summary of vital statistics: 2008

The number of births in the United States decreased between 2007 and 2008 (preliminary estimate: 4 251 095). Birth rates declined among all women aged 15 to 39 years; the decrease among teenagers reverses the increases seen in the previous 2 years.…

Anxiety and vulnerability in parents following the death of an infant

1987

Tags: 1987, anxiety, Backlog, Death, Dyregrov A, Infant, Journal Article, Matthiesen SB, Parents, Scandinavian Journal Of Psychology

Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents

BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a…

Are one or two dangerous? Opioid exposure in toddlers

Ingestions of opioid analgesics by children may lead to significant toxicity as a result of depression of the respiratory and central nervous systems. A review of the medical literature was performed to determine whether low doses of opioids are…

Aromatic L-amino acid decarboxylase deficiency: overview of clinical features and outcomes

In this paper, we provide a brief update of diagnostic considerations and biochemical phenotype in L-amino acid decarboxylase deficiency. We review clinical features and outcome data in 11 affected patients, including 7 previously unreported cases.…

Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit

IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children…

Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity

Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course…

Assessment of the need for palliative care for children in South Africa

UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries'…

Association between religious and socio-economic background of parents of children with solid tumors and DNR orders

BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who…

Associations between Music Therapy, Pain and Heart Rate for Children Receiving Palliative Care

Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established.…

Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients

OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical…

Autopsies in children continue to reveal unanticipated discrepancies between autopsy findings and antemortem clinical diagnoses

2009

Tags: 2009, Archives of Disease in Childhood, Autopsy/standards/statistics & numerical data, Backlog, Baines P, Child, Diagnosis, Epidemiologic Methods, Female, Humans, Infant, Intensive Care Units, Journal Article, Male, Narayanan A, Pediatric/statistics & Numerical Data, Preschool, Thorburn K

Avoiding admission for afebrile pediatric sickle cell pain: pain management methods

Bacteraemia and antibiotic use in respiratory syncytial virus infections

AIMS: To examine the frequency of and risk factors for bacteraemia in children hospitalised with respiratory syncytial virus (RSV) infection; and to determine current use of antibiotics in hospitalised children with RSV infection. METHODS:…

Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic

Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died…

Basic neonatal resuscitation skills of midwives and nurses in Eastern Ethiopia are not well retained: An observational study

BACKGROUND: Neonatal resuscitation is a life-saving intervention for birth asphyxia, a leading cause of neonatal mortality. Worldwide, four million neonate deaths happen annually, and birth asphyxia accounts for one million deaths. Improving…

Behavioral Observation of Infants with Life-Threatening or Life-Limiting Illness

BACKGROUND: Infants in the neonatal intensive care unit experience aversive stimuli that cause pain and distress. Maintaining adequate relief from pain and distress is challenging because of infants' varying ages and stages of development and their…

Tags: 2020, August 2020 List, behavioral observations, COMFORT-B, Fortney C A, Infant, N-PASS, neonatal intensive care, Nursing Research, Palliative Care, Pickler R H, Sealschott S D

Being a dad to a child with Down's syndrome: Overcoming the challenges to adjustment.

BACKGROUND: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers' experiences of parenting a child with Down's syndrome…

Tags: *Down Syndrome/nu [Nursing], *Fathers/px [Psychology], 2019, 2023 SE4 - Parent Perspectives, Adult, Child, Child, Preschool, Grounded Theory, Humans, Infant, Journal Of Applied Research In Intellectual Disabilities, Male, Middle Aged, Qualitative Research, Ridding, Anna, Williams, James

Being a Parent: Findings from a Grounded Theory of Memory-Making in Neonatal End-Of-Life Care

PURPOSE: Neonatal palliative care guidelines increasingly recommend that parents be encouraged to provide care for their dying baby and to spend time with the before and after death. However, little is currently known about how parents perceive such…

Tags: 2021, Bereavement, Harms L, Infant, Journal of Pediatric Nursing, May 2021 List, Memory-making, Newborn, Nicholson P, Parent, Photography, Thornton R

Bereaved parents' experience of research participation.

Despite the ethical codes guiding bereavement research, few studies have been conducted to evaluate the perceived stress experienced by the bereaved, and to explore which methodologies cause least distress. This article investigates how bereaved and…

Bereaved Parents' Perceptions of Infant Suffering in the NICU

CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe…

Tags: 2019, 2022 Special Edition 1 - Parent Perspectives, Baughcum AE, Fortney CA, Gerhardt CA, Infant, Intensive Care, Journal of Pain and Symptom Management, Keim MC, Moscato EL, Mothers, Neonatal, Neonatal Intensive Care Units, Newborn Infant, Nicu, Parents, Perception, Suffering, Winning AM

Bereavement support used by mothers in Ireland following the death of their child from a life-limiting condition

BACKGROUND: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in…

Beta-endorphin and cholecystokinin 8 concentrations in peripheral blood mononuclear cells of autistic children

beta-Endorphin (beta-EP) and cholecystokinin 8 (CCK-8) concentrations in peripheral blood mononuclear cells were measured in 12 drug-free autistic (AU) children, in 10 drug-free children with pervasive developmental disorders (PDD) and in 11 healthy…

Beta-endorphin concentration after administration of sucrose in preterm infants

BACKGROUND: Sucrose is an effective analgesic for procedural pain in preterm infants. It has been hypothesized that its analgesic effects are mediated by the release of endogenous opioid neurotransmitters such as beta-endorphin. OBJECTIVE: To…

Beta-endorphin levels of children in acute stress

In this study aiming to clarify the relationships between beta-endorphin and glucose levels, beta-endorphin levels were determined in children in acute stress. The study was carried out on 32 critically ill children between 5 days and 12 years…

Birth weight percentile and the risk of term perinatal death

OBJECTIVE: To estimate the association between birth weight percentile and the risk of perinatal death at term in relation to the cause of death. METHODS: We performed a retrospective cohort study of all term singleton births in delivery units in…

Bone scan as a screening tool in children and adolescents with back pain

Retrospective review of 142 patients from 2 teaching hospitals, investigated for persistent backache. The inclusion criteria were to be up to 18 years, to have no known associated diseases, and to have had a bone scan as a part of their work up.…

Bowel obstruction in an infant with AIDS

Case Report
An 8 month old girl was admitted with a 2 day history of increasing respiratory distress, sever abdominal pain and distension. [...]

Tags: 1990, Acquired Immunodeficiency Syndrome/complications, American Journal Of Roentgenology, Backlog, Cytomegalovirus Infections/complications/pathology/radiography, Female, Humans, Infant, Intestinal Obstruction/complications/pathology/radiography, Intestine, Josephs SH, Journal Article, Patterson K, Sivit CJ, Small/pathology/radiography, Taylor GA, Thompson R

Bowel obstruction in an infant with AIDS

AIDS accounted for approximately one quarter of all deaths in South Africa in 2000 and has become the country’s single biggest cause of death.1 Paediatric HIV infection is now a common cause of admission to hospital and a major contributor to…

Brachytherapy in children with rhabdomyosarcomas of the nasolabial fold

BACKGROUND: Rhabdomyosarcomas (RMS) of the nasolabial fold can be difficult to manage surgically due to functional and cosmetic limitations. Therefore, brachytherapy (BT) has been proposed to improve local control while limiting the volume of…

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